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    Lessons Learned fromthe World Trade

    Center Disaster:

    Emergency Preparedness forPeople with Disabilities in

    New York

    September 9, 2004

    841 Broadway, #301New York, NY 10003

    212/674-2300 x140 Tel212/674-5619 TTY212/254-5953 Fax

    www.cidny.org

    The Center for Independence of the Disabled, NY

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    Acknowledgments

    This report was made possible through funding and support from the New York

    Community Trust.

    We would like to thank Anne M. Davis, president of the Center for Independence

    of the Disabled in New Yorks board, Susan Scheer, former executive director of

    CIDNY, and the board and staff of CIDNY for their exceptional response to the

    World Trade Center disaster. We would also like to recognize our sister

    Independent Living Centers and the many individuals who provided tangible andintangible support through this difficult period.

    CIDNY is grateful for the support of American Red Cross, Ethel Louise Armstrong

    Foundation, Lions Clubs International Foundation, Robert R. McCormick Tribune

    Foundation, Mitsubishi Electric America Foundation, Robin Hood Foundation,

    The September 11th Fund, and individual donors for their recognition of the

    needs of people with disabilities and their commitment to improving response

    and recovery in an emergency. We are grateful for assistance received from the

    U.S. Department of Education, Rehabilitation Services Administration, and the

    New York State Department of Education, Vocational and Educational Services

    for Individuals with Disabilities.

    Special thanks to Linda Ostreicher for her participation in researching and writ-

    ing this report. Thanks are due to Sharon Fong, Director of Administration, who

    was responsible for editing the report, and Margi Trapani, Director of

    Communications & Education, who produced and assisted in its release to the

    public.

    Finally, we would like to recognize the spirit, resilience, and creativity of the many

    people with disabilities who survived and are acting with others in their commu-nities to improve things for all of us.

    Susan M. Dooha, JDExecutive Director

    (c) 2004 Center for Independence of the Disabled, NYi

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    CONTENTS

    Summary of Report . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1

    Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .3

    Section 1: The Center for Independence of the Disabled in

    New Yorks Response to the World Trade CenterDisaster . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .5

    Section 2: How the Impact of Disasters on People with

    Disabilities Differs from the Impact on the General

    Population . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .20

    Section 3: Learning from ExperienceSuccessful Strategies

    from 9/11 and the 2003 Blackout . . . . . . . . . . . . . .42

    Section 4: Learning from ExperienceLessons That Should

    Have Been Learned Before September 11 . . . . . .47

    Section 5: Recommendations . . . . . . . . . . . . . . . . . . . . . . . .59

    Notes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .62

    ii

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    SUMMARY OF REPORT

    There were a number of lessons learned during and immediately after 9/11 about

    preparation and accommodations for people with disabilities. The most promi-

    nent and disturbing conclusion was that despite the fact that many of these

    lessons had been learned before 9/11, systemic preparation conceived of or

    conducted by mainstream emergency responders and relief agencies did not

    consistently take into account the specific needs of people with disabilities.

    Every individual is entitled to equal access to available services, particularlythose related to emergency response and recovery activities. As such, relief

    agencies and other service providers are responsible for ensuring appropriate

    accommodations that allow people with disabilities the same chance as other

    members of the public to survive and recover from disasters. To achieve this

    equity, the following recommendations are made:

    Emergency responders, as well as relief and other service agencies,must incorporate into their planning and operations an appropriate

    strategy for ensuring equitable access to response and recovery

    services for people with disabilities. Emergency planning by individual

    employers, landlords, and organizations should include purchasing and

    training staff in the use of evacuation and other emergency equipment

    appropriate for people with disabilities. Emergency professionals should

    rely on the disability community to advise them on which types of equip-

    ment are best.

    Relief agencies cannot wait until they are in the middle of a disasterto start training their staff in disability awareness. Train volunteers and

    staff ahead of time in basic disability awareness and etiquette, and in how

    to accommodate needs that commonly arise for people with disabilities.

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    The day after a disaster is too late for agencies to start doing outreachto make their services known to people with disabilities. It is neces-

    sary to communicate with members of the disability community:

    * On an ongoing basis, as part of a preparedness outreach effort

    * Before an event, to warn about an emergency

    * During an event, to give information and instruction about the

    emergency

    * After an event, to give information about recovering from the emer-

    gency.

    During the recovery phase, there must be a priority to restore oraddress those services and needs most critical to people with dis-

    abilities, especially related to access to home attendants, assistive

    equipment, medication, accessible transportation and temporary

    shelter, and food delivery.

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    3

    INTRODUCTION

    Any disaster will, by definition, disrupt lives. Still, some response and recoveryissues are predictable, common to many disasters and crisis situations: these

    are the ones that can be successfully minimized through pre-crisis planning and

    preparation.

    For people with disabilities, however, existing disaster response and recovery

    measures are significantly less successful, given that little systemic preparation

    is conceived of or conducted by mainstream emergency responders with their

    specific needs in mind. In fact, most of the planning related to emergency

    measures for people with disabilities consists of lists of things that consumers

    and their advocates should doa practical first step, but one that clearly

    requires additional substantial support by emergency responders who have

    incorporated into their planning and operations an appropriate strategy for

    ensuring equitable access to response and recovery services.

    The Center for Independence of the Disabled in New York (CIDNY) supports all

    efforts to help people with disabilities prepare themselves for emergencies, an

    approach that coincides with its fundamental mission of assisting consumers in

    achieving maximum independence. CIDNY has distributed thousands of

    brochures with advice and checklists on disaster preparedness to consumers

    and sister agencies working with the disability community. CIDNY actively

    provides technical assistance to government and other social service agencies

    on ways in which to assist people with disabilities during and after emergency

    situations. To strengthen this effort, this report focuses on what relief agencies

    and other service providers can doand have doneto give people with

    disabilities the same chance as other members of the public to survive and

    recover from disasters.

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    [Former Executive Director] Susan Scheer says

    CIDNY has realized it has a large constituency of people withdisabilities who are not traditionally considered independent

    living consumers.

    Weve come to know a lot of people, she says,who

    were doing their own things and had successfully created

    their own support networks. When their support systems

    crumbledas they so dramatically did [on 9/11]many still

    thought they could work things out themselves. But as

    things dragged on, they found they needed assistance.

    9-11 Offers Important Lessons in Disaster Preparedness,

    Richard Petty, ILRU Network, January 2002

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    SECTION 1: THE CENTER FORINDEPENDENCE OF THEDISABLED IN NEW YORKSRESPONSE TO THE WORLDTRADE CENTER DISASTER

    Like most New Yorkers, Susan Scheer, the former executive director of CIDNY,

    remembers September 11 very clearly:

    When the first plane hit, we were in a staff meeting at CIDNY.

    We heard something about the World Trade Center before we

    went into the meeting. When we came out, there was all this

    news about the building being on fire and people evacuat-

    ing. Everybody got on the phone to call our consumers, and

    I had the staff print out everything they couldI had a feel-

    ing we might not be able to get to the computers for a while.

    We wrote down each others phone numbers and beeper

    numbers. Then I told people they could go home. Those who

    couldnt make it home arranged to stay with staff members

    who lived nearby.

    It quickly became clear that, as the Independent Living Center closest to the

    World Trade Center, CIDNY would be the leading service coordinator for people

    with disabilities who were affected by the September 11 attacks. In addition to

    helping individuals with disabilitieswhether they were disabled before or as a

    result of the WTC incidentCIDNY became a leading source of information on

    disability issues for the many private and public entities participating in the mas-

    sive response and recovery effort.

    CIDNY was located just inside the border of the so-called Frozen Zone. On

    September 12, CIDNY staffers were not allowed back in the building that housed

    their office until late in the day. There were no phones, no electricity.

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    For the first few days, Scheer recalls, we were just putting out fires. We

    began hearing from our consumers, and then they started telling us about other

    people in their buildings who were in trouble . . . . All our deaf consumers showed

    up right away, to find out what was happening. There was this chaos on TV and

    they didnt understand what it meant.

    Traumatized, forced to evacuate their own headquarters,

    and limited by disrupted phone services and other utilities,

    CIDNYs staff was in no position to launch an immediate

    emergency response. At the same time, state agencies that

    [Brad] Williams [Executive Director of the New York StateIndependent Living Council] thought would be involved in

    responding to people with disabilities during the crisis

    seemed to be waiting for someone to tell them what to do.

    Frustrated, Williams called the National Council on

    Independent Living (NCIL) for help.

    NCILs Marcie Roth called the White House disability liai-

    son who, in turn, began contacting federal agencies and the

    New York governors office. Finally, Williams says, the state

    agencies kicked into gearten days to two weeks after the

    attacks.

    NYSILC Crisis Response Plan Focused on Communication,

    Coordinationand Returning Control as Soon as Possible,

    ILRU Network, January 2002

    In immediate response to the disaster, CIDNY played a central role in gathering

    information about the needs of people with disabilities and communicating that

    information to the media and to agencies and authorities controlling the delivery

    of disaster recovery services. CIDNY further advised local hospitals treating sur-

    vivors of the attack to refer to the agency those who were newly disabled.

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    CIDNYs small staff was stretched to its limit by the addition of so many new con-

    sumers with urgent and complex needs. Volunteers were soon recruited, along

    with a dedicated coordinator, to manage CIDNYs disaster recovery efforts,

    including the logistics of storing and distributing an outpouring of donated assis-

    tive equipment and medical supplies. Several new counselors were hired, and

    other staff diverted much of their time to counseling and other activities related

    to the WTC incident.

    Meanwhile, hundreds of consumers not directly affected by September 11 still

    counted on the agency for assistance. According to Sharon Shapiro, CIDNYs

    then assistant director, it was a struggle to maintain the agencys regular pro-grams during the initial disaster recovery period.

    Landlords didnt stop evicting tenants, and hearings with Social Security and

    HRA kept coming up, stated Ms. Shapiro. She also noted that CIDNYs regu-

    lar clientsthose who were not directly involved in the disasterwere fearful

    and had a greater need for counseling after the attack, mirroring the unease and

    anxiety experienced by all New Yorkers.

    The agency rapidly developed a Disaster Relief Services program, encompass-

    ing three major functions:

    Direct services, particularly case management for people with disabilitiesaffected or who were newly disabled by the WTC incident

    Education, training, and technical assistance to relief and other service-

    providing agencies

    Outreach to people with disabilities who did not come forward seekinghelp in the first weeks or months after the attack.

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    Direct Services for People with DisabilitiesAffected by September 11

    1. Case Management and Other Direct Services

    CIDNYs staff provided a broad array of services in assisting people with dis-

    abilities in the aftermath of the WTC incident:

    Comprehensive situational assessments of consumer needs, in suchareas as health care, finances, mobility, transportation, assistive tech-

    nology, child care, family relations, emotional and mental health,employment, and legal matters

    Crisis intervention, providing immediate assistance in urgent situa-tions, including service coordination for accessing federal, state, and

    private disaster relief programs

    Peer counseling and referrals to specialized mental health services asneeded

    Referral and advocacy for consumers and their families for appropri-ate benefits, entitlements, and services provided by other govern-

    mental and private agencies

    Home visits to consumers requiring peer support and/or needing helpto complete applications for disaster relief and environmental cleanup

    services.

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    9

    KR, a twenty-one-year-old woman with an existing trau-

    matic brain injury, was expecting a visit from the Homebound Unit

    of NYCs Human Resources Administration (HRA) on September

    11, to determine her eligibility for public assistance. She lived

    close enough to the site to see the attack and was highly trau-

    matized by what she saw. Just when she needed assistance the

    most, HRA canceled its visit because of the disaster.

    She contacted CIDNY in early October 2001, needing

    emergency food and cash assistance. The agency sent a volun-teer to her apartment, bringing food and money, as well as help-

    ing her apply for assistance from various relief agencies.

    Within two weeks, the Red Cross gave her food, clothing,

    and a comfort kit, and agreed to help her find alternative hous-

    ing. In the meantime, they did not assist with rent in her existing

    apartment, so she ran the risk of eviction. CIDNY assisted KR

    with obtaining rental assistance from FEMA and signing up for

    Section 8 housing, which normally has a waiting list of up to ten

    years. She was not eligible for emergency income replacement

    because she had no income before the disaster.

    CIDNY consumer case file

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    2. Services for Newly Disabled People

    Newly disabled people faced social isolation, often stemming from mobility

    issues and mental health concerns like depression, anxiety, and stress.

    Those who found their way to CIDNY were advised about making housing

    adaptations; using the vocational rehabilitation system; assistive technology;

    managing medical concerns and costs; learning to consider accessible

    facilities and transportation in planning daily life; and acquiring retraining or

    assistance with basic activities like personal care, household tasks, commu-

    nication, and travel.

    NM was a temporary employee located in a World Trade

    Center office. She never arrived at work on September 11; she

    was trampled by the escaping crowd, which knocked her uncon-

    scious, broke her collarbone, and badly bruised her legs and

    back.At first, NM managed, on her own, to obtain Disaster

    Unemployment benefits, a months rent, and $50 for food from

    the Red Cross, as well as coverage for her prescriptions from the

    Crime Victims Fund. She contacted CIDNY a week after the

    attack, asking for help in applying for Disaster Relief Medicaid; at

    this point, she felt overwhelmed by the physical and emotional

    effects of her ordeal and unready to navigate the bureaucratic

    process of seeking additional assistance. She had not yet

    thought about long-term needs for health coverage, transporta-

    tion, and finding new employment.

    CIDNY consumer case file

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    JC is a forty-five-year-old Hispanic man who was work-

    ing as a hotel employee in the World Financial Center on

    September 11, 2001. The father of four, JC became unemployed

    after the WTC incident, not only because of the destruction of his

    place of employment, but also due to a severe injury to his legs

    and the exacerbation of an existing liver condition caused by the

    attacks. His health was further worsened by the onset of post-

    traumatic stress.

    At the time he was referred to CIDNY, JCs case had

    been closed by another disaster relief agency due to thatagencys determination that he had failed to comply with a serv-

    ice plan. Over the course of three months, CIDNY assisted JC in

    (1) successfully reapplying for disaster relief funds from Safe

    Horizon, (2) completing an application for the American Red

    Cross Additional Assistance Program, and (3) receiving informa-

    tion and counseling about refinancing his mortgage with a low-

    interest rehabilitation loan. In addition, as JC begins his transi-

    tion from disaster relief assistance to longer-term case manage-

    ment, CIDNY continues to work with him on issues related to

    Social Security Disability recertification and access to public

    health insurance for himself and his family.

    CIDNY consumer case file

    3. Removing Barriers to Full Integration by

    Relief and Service-Providing Organizations

    From the outset, lack of appropriate access and accommodations for people

    with disabilities seeking response and recovery services in the aftermath of

    the WTC attack was evident, reflecting, among other factors, methods of pro-

    gram administration that disregarded needs specific to those with physical,

    medical, cognitive, or psychiatric conditions. Through its work with WTC

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    consumers, CIDNY identified a series of administrative procedures that

    resulted in inappropriate service denials with a wide range of public and pri-

    vate agencies. CIDNY also observed that agencies lacked disability-related

    information.

    In particular, people with disabilities affected by the WTC attack were unable

    to access services because, for example, they could not read signs, they

    lacked access to American Sign Language (ASL) translation at service and

    disaster sites, there was no teletypewriter (TTY) system set up for reaching

    specific hotlines, there was a disregard for reimbursement of assistive tech-

    nology destroyed in the attack, and there was a lack of effort to make visitsto homebound consumers to assist with disaster relief paperwork.

    CIDNY received a call from a displaced Battery Park City

    resident with a mobility impairment. She had called FEMA to reg-

    ister and assess damage to her apartment. FEMA regulations

    required that she meet the FEMA representative at her apartment

    to assess damage. For the consumer, this was physically impos-

    sible, particularly given debris and other barriers situated around

    the vicinity of the WTC attack. When she was unable to comply,

    FEMA closed her case. CIDNY successfully advocated with

    FEMA to establish a waiver of this requirement for people with

    mobility impairments.

    CIDNY consumer case file

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    MR, a person living with mental illness and an orthope-

    dic disability, lived downtown. She had received the offer of a new

    job in the downtown area and was on her way to a meeting about

    the job on September 11. When the attack occurred, MR was

    near the collapsing buildings and was knocked over by people

    fleeing the scene, sustaining back and ankle injuries that exacer-

    bated her existing orthopedic condition. Moreover, MR and her

    son were displaced from their apartment for many months, which

    was covered with dust and debris from the disaster.

    MR came to CIDNY in late September 2001. Due to herphysical disability, it was impossible for her to register for assis-

    tance with the Red Cross, as applicants were expected to stand

    in long lines to meet with relief workers in person. She had asked

    for an accommodation, but was told that she would have to wait

    with the other applicants if she expected help. In response,

    CIDNY arranged for MR to be registered at the Carmine Center,

    the only accessible site among all the locations dispensing dis-

    aster relief assistance.

    CIDNY consumer case file

    Education, Training, and TechnicalAssistance to Other Relief Agencies

    As indicated, through direct services to consumersand from inquiries and

    reports from other service providersCIDNY was able to track systemic and pol-

    icy issues affecting service delivery to people with disabilities. The agency

    responded to these issues by:

    Participating in the United Services Group (USG), a coalition of disasterrelief and service-providing agencies that met periodically to share infor-

    mation, discuss policy, and plan actions. CIDNY participated in the USGs

    Case Management Working Group, Technology Committee, Training

    Committee, Public Relations Committee, and Service Coordinator

    Steering Committee

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    Creating and distributing basic informational materials to other agenciesabout disability issues, benefits, and resources, as well as materials spe-

    cific to serving hard-to-reach populations

    Offering education and training workshops to other agencies, and assist-

    ing them in integrating materials on disability awareness and the impact of

    having a newly acquired disability into their own training and orientation

    programs

    Answering questions from individual service coordinators at other agen-cies about disabled World Trade Center consumers among their caseload,

    and accompanying consumers to meetings with other service or benefits

    providers as their advocate.

    In the first months after the attack, CIDNY conducted

    daily conference calls with FEMA and the Red Cross. One major

    issue was the need for accommodations at the Disaster

    Assistance Centers, where people applied for assistance from

    dozens of government and private relief agencies. Multiple visits

    were often required. Many people with disabilities were unable to

    apply for benefits because they could not stand on line for the

    long periods of time required. At the start, there were no chairs

    at centers, and people were not allowed to send representatives

    to file applications on their behalf, even if they were homebound

    prior to the attack.FEMA did not see a need for accommodations because,

    as one CIDNY staffer recalled, They said they had received

    10,000 applications and none were from people with disabilities.

    But they had taken the question on disability out of their screen-

    ing interviews to save time. Eventually, FEMA restored the dis-

    ability screening question, making it possible for them to track

    applications from people with disabilities.

    CIDNY staff notes

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    Distribution of letters with instructions on how to register with the EPAfor environmental inspections and assistance to every person in

    CIDNYs consumer records database residing in designated zip code

    areas.

    Other outreach sites included hospitals and clinics specifically serving World

    Trade Center-affected populations, including several large hospitals provid-

    ing health screening and medical care to World Trade Center recovery and

    volunteer workers with emerging respiratory difficulties, skin lesions, post-

    traumatic stress syndrome, and other problems. CIDNY worked closely with

    Mt. Sinais Selikoff Center for Occupational and Environmental Medicine,

    whose social workers began to refer consumers to CIDNYs WTC Service

    Coordination Program and benefits-related workshops.

    2. Media and Public Relations

    Articles and public service announcements were targeted to media accessi-

    ble to consumers of varying sensory capacity, including those speaking lan-

    guages other than English. CIDNY assisted reporters covering the disaster.

    Newspapers: The Wall Street Journal, the New York Times, ABLE A story recounting ongoing issues for a CIDNY consumer was broad-

    cast on 44 New York State radio stations on September 10, 2003. The

    story was picked up by CBS Radio News Network and broadcastnationwide on another 726 stations.

    Information posted on CIDNYs and other metropolitan New YorkIndependent Living Centers Web sites, as well as on the USGs pub-

    lic Web site.

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    A mother in Queens had two daughters. The older

    daughter worked in the World Trade Center and died in the attack.

    The younger daughter requires full-time care because she has

    autism. The older daughter had supported the family financially

    and helped her mother care for her autistic sister.

    By the time the mother contacted CIDNY, she was at the

    end of her rope. Caregiving for her remaining daughter kept her

    so busy that she had no time to apply for benefits for victims fam-

    ilies, but she had heard about CIDNY in the local news. CIDNY

    helped her to get assistance for her daughter and connected herwith support groups in Queens for parents of autistic children.

    CIDNY consumer case file

    3. Tip Cards

    These introduced CIDNY as a resource for people who needed help related

    to the WTC incident. The cards were produced in English, Spanish, and

    Mandarin, and included information on how to contact CIDNY. They were

    directly provided to:

    Health and hospital settings, including emergency rooms, trauma,psychiatric and rehabilitation units, information desks and waiting

    areas; community health clinics, mental health centers

    Social and human service agencies (including disaster reliefproviders like Safe Horizon, Catholic Charities, American Red Cross),

    homeless shelters, food pantries and hunger-related organizations or

    programs, houses of worship, senior citizen and other community

    centers, public schools

    NYPD community relations personnel and local precincts, Fire

    Department community relations personnel and local engine and lad-

    der companies, Emergency Medical Service, etc.

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    4. Outreach through the Internet

    CIDNY posted tip cards on its Web site (www.cidny.org) and asked other

    Independent Living Centers to do the same. CIDNY also provided the ILCs

    with information to disseminate about CIDNYs disaster relief services and

    disability-related workshops. Additional entit ies contacted to

    request assistance in Internet outreach included:

    Disability organizations: United Cerebral Palsy of New York, MultipleSclerosis SocietyNew York Chapter, Blindness Resource Center,

    New York State Independence for the Disabled (NYSID), National

    Spinal Cord Injury Association, Coalition of Voluntary Mental HealthAgencies

    9/11 relief providers: the United Services Group, Safe Horizon, theAmerican Red Cross

    E-mail lists originated by Lower Manhattan tenants organizations,displaced Battery Park residents, and others.

    In spring 2002, a man with quadriplegia who lived near

    Ground Zero called CIDNY seeking financial aid to purchase an

    air filter.Though he had experienced respiratory problems severe

    enough at one point to need hospitalization, his apartment had

    not yet been cleaned of the dust and debris of 9/11. As he could

    not leave his home, he went unnoticed by outreach personnel ofagencies providing relief in the downtown area and was unaware

    of how to seek help until, by chance, he learned of CIDNY.

    CIDNY consumer case file

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    Poor environmental conditionsincluding toxic or poor air qualityare dangerous to everyone, but for people with breathing-related

    medical conditions, they keep them from being able to go outside or

    open windows at all.

    Stories came in [to CIDNY] about people with mobility

    disabilities that were not readily visible, having to explain repeat-

    edly why they could not flee the scene of the tragedy in order to

    get lifesaving assistance.

    CIDNY staff notes

    LM did not evacuate from her Battery Park City apart-

    ment, although she knew others were leaving, because she was

    afraid to go outside into the clouds of dust and debris. She had

    a traumatic brain injury, facial paralysis, and hearing and speak-

    ing difficulties. Because one of her eyes didnt close easily, she

    knew it might be injured by the debris in the air. She believes she

    stayed in her apartment for thirty-six hours, waiting for the air to

    clear.

    CIDNY consumer case file

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    HARRIS: Davis-Chanin family members. . . . lived near Battery

    Park, but theyve been in a single-room hotel for the past two

    months . . . I cant imagine how all four of you plus the four . . .

    guinea pigs . . . have . . . been living in . . . a one-room hotel room.

    LAURA DAVIS-CHANIN: Its very, very difficult . . . managing chil-

    dren and its also a smaller room than normal because I

    [need to] have a handicapped-access bathroom. So its

    smaller and its really, really difficult. Plus with my scooter,

    its a very small space.

    Displaced New York Family Copes with Living in One Room

    After September 11, CNN transcript, November 22, 2001

    At all stages after the attack, transportation was one of the most common prob-

    lems for which consumers with disabilities sought CIDNYs assistance. iCan

    News Service reported that many people with disabilities living in Lower

    Manhattan were not getting to health-care appointments because they could not

    find transportation or were afraid to leave their homes. Those with blindness orlow vision and their guide dogs had to spend hundreds of hours learning how to

    navigate the rearranged city, on foot and by rerouted public transportation. The

    League for the Hard of Hearing found that 50 percent of its clients were either

    canceling appointments or just not showing up.

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    The Port Authority Trans-Hudson has been ferrying

    passengers under the Hudson River for decades. It was one

    of the first modes of transportation in the area to comply

    with the Americans with Disabilities Act. With the key sta-

    tions equipped with elevators, travel to New York was,

    according to Hudson County resident James Stoney, a

    breeze. Getting places in New Jersey has always been dif-

    ficult, if not downright impossible, for wheelchair users. For

    many individuals with disabilities, Manhattan provided a

    variety of opportunities. When the twin towers fell, PATHservice between cities in Hudson County and downtown

    New York ended.

    Paradise Lost, by Marianne Valls, from the Web site of the

    New Jersey Developmental Disabilities Council

    (It took over two years for PATH service to the World Trade Center

    site to be restored.)

    2. Disasters Disrupt Daily Life Arrangements for All, but

    People with Disabilities Have More Trouble Putting

    Things Back Together

    Many disabled residents could not clean the hazardous dust and debrisfrom their apartments themselves nor were their caretakers, who could

    have assisted with this task, allowed into the Frozen Zone for many days.

    Some people with disabilities who had to leave their homes had evenmore trouble than people without disabilities finding new affordable

    housing in New York Citys extremely tight and expensive real estate

    market. In addition, New York Citys rental housing stock, being older

    than that in most areas around the United States, is composed of lessaccessible units for people with mobility impairments.

    People with disabilities tend to face multiple obstacles to finding work.It is difficult for them to get essential skills and education, to find

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    employers who will hire them, and to find jobs that provide the accom-

    modations they need to function. Those who lost jobs due to the WTC

    attack faced even tougher job searches than all other New Yorkers

    who became unemployed during the post-disaster economic slump.

    Computer systems governing public assistance, food stamps, andMedicaid failed, as central offices of city agencies were in the area

    damaged by the attack. Some food stamp recipients whose benefits

    were cut off by computer failures were able to walk to food pantries

    and soup kitchens to get groceries. People who couldnt walk far

    enough, or couldnt wait in line and carry home a load of groceries,

    were unable to get emergency food.

    GM was a resident of Battery Park City who had para-

    plegia. When forced to leave his apartment, he found a new one.

    However, to be accessible to him, it needed modifications, and

    his landlord would not allow him to make them. This was a viola-

    tion of fair housing rules, which permit tenants to modify their

    apartments for accessibility as long as they agree to return them

    to their original condition when they move out.

    CIDNY consumer case file

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    were unavailable for many people in the Frozen Zone for a prolonged

    period of time.

    Access-A-Ride and other transportation for people with disabilitieswere interrupted, thereby causing many people with disabilities to be

    captive in their homes and unable to get out for appointments, food,

    and services.

    Closed-captioning for the deaf on television was suspended for someperiod of time, causing immense confusion for the hearing impaired,

    who could not obtain accurate or timely information on what was hap-

    pening during and after the attack. Exacerbating this situation,

    Telecommunications for the Deaf reported that telephone relay cen-ters (which translate typed messages from deaf callers into spoken

    words to the people they are calling, and vice versa) were unprepared

    for the deluge of calls on September 11, so that many callers were

    unable to communicate with friends and family.1

    New York City Transit, which runs the Access-A-Ride

    paratransit service, is taking reservations only one to two

    days in advance, instead of the usual four days. Buses . . .

    cannot go below the Frozen Zone near the attack site . . .

    Some subway stations remain closed and are being rerout-

    ed, which may cause complications for people with mobility

    impairments who depend on catching the train at a specific

    stop, or for people who are blind and rely on their routine.

    Disability Community Struggles in Aftermath of Attacks,

    Nicole Bondi, iCan News Service, September 18, 2001

    ---------------------------------------------------------------------------------

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    Citymeals-on-Wheels, which provides food for the

    homebound elderly, saw service disrupted last week when

    meal vans could not make it into the city after the attacks ...

    Citymeals-on-Wheels program coordinator Alison Leavitt

    said 100-200 clients did not get meals on either Tuesday or

    Wednesday . . . All the agencys clients have been contacted

    and emergency supplies went out last week to those who

    needed it most, Leavitt said.

    NYC Disabled Community Faces Hardships After Attack,

    Long-Term Rehab News, November 2001

    The Response to Disaster by ReliefAgencies Is Experienced Differently

    by People with Disabilities

    1. Disaster Services Are Not All Accessible

    to People with Disabilities

    As evidenced in the aftermath of the WTC incident, emergency response

    and recovery measures did not accommodate people with disabilities.

    Warnings and instructions were not routinely communicated in waysthat can be seen, heard, and understood by people with disabilities.

    Most shelters and Disaster Assistance Centers were not accessible topeople with mobility impairments, and the centers did not have signs

    and printed materials that were readable by the blind and visually

    impaired.

    Many relief agencies did not haveor failed to publicizeTTY num-bers and most had no American Sign Language interpreters for the

    deaf and hearing impaired.

    People with disabilities were not always able to travel to sites provid-ing relief services and supplies, reflecting the widespread absence of

    accessible modes of transportation.

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    Alternative methods of outreachfor example, home visits or infor-mation sessions held at local community centers rather than out-of-

    neighborhood locationswere not conducted, even though there

    were people who were homebound or who had cognitive or psychi-

    atric conditions that precluded them from obtaining assistance from

    relief agencies directly.

    Some people with disabilities were left behind in

    evacuated buildings because rescue agencies didnt fully

    understand how someone could not be aware of the evacu-

    ation effort. Relief workers often had difficulty understand-

    ing why the public transportation shutdown prevented peo-

    ple from accessing emergency assistance. Emergency

    housing and shelters were not adequately equipped for peo-

    ple who need accessible lodging. Trauma counselors didnt

    always fully appreciate the experience of trying to remain

    independent when routine services and supports have gone

    to hell.

    Manhattan CIL Rebounds in Aftermath of Attacks with Help from

    IL Community, Kaye Beneke, ILRU Network, January 2002

    DM, a Battery Park City resident, uses crutches and has

    asthma. When a shuttle bus began operating to link the housing

    complex to the streets outside the Frozen Zone, she found the

    shuttle was a small yellow school bus with no lift, which made it

    inaccessible to her. She had to take taxis instead. CIDNY con-

    tracted with two car services to provide transportation for World

    Trade Center survivors to medical appointments and other

    essential destinations.CIDNY consumer case file

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    2. There Is a Lack of Disaster Services

    Specifically Needed by People with Disabilities

    Many of the disaster response and recovery efforts were not structured to

    meet specific needs of people with disabilities.

    Methods of outreach, both for evacuation immediately after the disas-ter and for overcoming the isolation that kept people uninformed of

    available help and how to get it, did not take into account ways in

    which to reach people who were homebound or with limiting cognitive

    or psychiatric conditions.

    There lacked mental health professionals experienced in workingspecifically with people with disabilities.

    Knowledge of benefits as they relate to people with disabilitiessuchas SSI, SSDI, Medicaid, housing accommodationswas not incorpo-

    rated into initial disaster relief efforts.

    There were no planned programs for assisting with the replacement ofdurable medical and other related equipment and medicine

    destroyed, lost, or left behind.

    There were no planned programs dealing with reimbursement foraccessible transportation or accessible hotel accommodations.

    An employee at the World Trade Center saw nineteen of

    her co-workers die before she escaped. The trauma triggered astroke, which made her blind. She had no idea that she was eli-

    gible for financial assistance as a survivor of 9/11 until she got in

    touch with CIDNY seven months after the World Trade Center dis-

    aster. The consumer was referred to CIDNY by her daughter, a

    California resident, after her employer notified her that she would

    be fired if she did not return to work by the end of the month.

    CIDNY consumer case file

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    When a Red Cross nurse asked RG if she had left her

    crutches behind and needed new ones, she said nobecause

    she uses a scooter. She had to leave it behind when she evacu-

    ated her Battery Park City apartment. But the Red Cross never

    asked if she needed a replacement scooter. They reported to

    CIDNY that all her needs were being met, even while she was

    staying in a friends apartment, where she couldnt take a show-

    er because the tub was not accessible.

    CIDNY consumer case file

    Things really improved . . . when Rosemary Lamb,

    representing the Office of Advocate for Persons with

    Disabilities, convinced public information officials at the

    NYC emergency control center to air vital contact informa-

    tion about assistance for people with disabilities.

    NYSILC Crisis Response Plan Focused on Communication,

    Coordinationand Returning Control as Soon as Possible,

    ILRU Network, January 2002

    3. Shortcomings Were Evident in Response to

    Requests Regarding People with Disabilities

    Most relief and other service agencies were quick to remedy problems once

    CIDNY and other disability advocates identified and offered suggestions on

    dealing with them. However, this did not necessarily help people with dis-

    abilities who were discouraged before the problem was fixed and did not

    return for assistance.

    All city, state, and federal agencies are required to have an employee

    to ensure compliance with regulations regarding disability issues.

    Many large nonprofit organizations also have them, since they are

    required to comply with the Americans with Disabilities Act.

    Nonetheless, many organizations involved in relief efforts did not have

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    an identifiable person with knowledge of disability needs or the

    responsibility to act as liaison with the disability community.

    Members of CIDNYs staff reported that relief agencies appeared tobelieve that disability was not our issue, so that they did not have to

    meet the needs of people with disabilities.

    After September 11, the disability liaison at the New York PoliceDepartment was promoted. Despite requests from Independent

    Living Centers for contact information for her replacement, the depart-

    ment did not name a replacement for over a year.

    After the 1993 bombing, many tenants of the World Trade Center and the build-ing management for the complex were aware that evacuation plans for people

    with disabilities were needed. Unfortunately, the evacuation plan for people with

    disabilities was lethal to them: It consisted simply of requiring them to go to pre-

    determined meeting sites within the building and wait for evacuation assistance.

    Two wheelchair users escaped from the World Trade

    Center disaster, using evacuation chairs with inexperienced

    helpers, because they broke the rules and left before being

    found by rescue workers. Most who did what they were

    expected to do, that is, wait to be rescued, died, according to

    June Kailes.

    Evacuation Preparedness: Taking Responsibility for Your

    SafetyA Guide for People with Disabilities and Other Activity

    Limitations, 2002

    ---------------------------------------------------------------------------------

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    One mans final image as he left the eightieth floor

    and made it to safety was that of a roomful of people using

    wheelchairs and walkers waiting to be rescued by the fire-

    fighters who were coming up the stairs. They all perished as

    the building collapsed shortly after.

    The Day the World Changed, Angela Miele Melledy,

    ABLE, October 2001

    4. Security Measures Create Barriers forPeople with Disabilities

    Blocking areas off can keep people with disabilities from travelingthrough or around an area.

    During searches of people with disabilities at airports, upon entry intobuildings, and elsewhere, security staff often do not realize that such

    individuals may have unfamiliar objects among their assistive equip-

    ment, that standing up for a wand examination can be difficult, and

    that some metal detected on their persons may be part of a prosthe-

    sis or medical device that cannot be removed.

    People with medical conditions may need to carry needles for insulininjections, scissors for changing bandages, or other items not usually

    permitted in shelters. To preserve their safety, these individuals must

    not be separated from their service animals or from assistive

    equipment.

    People who have communication impairments or cognitive disabilitiescan be seen as threatening or uncooperative by untrained security

    personnel. In turn, guards demanding identification or explanations

    can intimidate and discourage people with posttraumatic stress

    disorder, chronic mental illness, mental retardation, or communication

    impairments.

    ---------------------------------------------------------------------------------

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    Security personnel at airports and other highly secure

    locations should be aware of people with hearing loss when

    they do not respond to all the questions and when they carry

    items such as pagers, hearing aids,TTYs, or cochlear implant

    processors. There was an incident when a plane was divert-

    ed because a deaf passenger went to the bathroom not know-

    ing he was supposed to stay seated.

    Lessons Learned from September 11, presentation by Claude L.

    Stout of Telecommunications for the Deaf, Inc., at the State of Science

    Conference at Gallaudet University, October 30, 2001

    ---------------------------------------------------------------------------------

    Agencies serving people with disabilities reported

    great difficulty in making sure their consumers were able to

    get home on the day of the disaster. Michael, a man with

    mental retardation who worked at the World Trade Center,

    was able to get out of the downtown area along with every-

    one else. However, he could not get home alone from

    Midtown in the chaos of that first afternoon, when the sub-

    ways were not running. His cell phone stopped working, and

    it was hours before he could get to a pay phone to call his

    sister, to tell her he was waiting for her husband Jake at thePort Authority:

    [Jake] called and promised to get to Michael as

    quickly as he could. But his attempts to rescue his brother-

    in-law became a race against time.

    ---------------------------------------------------------------------------------

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    Michael called me back and said, Im so scared.

    Wheres Jake? Pleeter [his sister] said.He told me that the

    police were clearing the area because it was a potential

    bomb site. I said, Tell them that youre mentally handi-

    capped and somebody is coming to get you. Jake Pleeter

    reached Michael just before the Port Authority was shut

    down.

    Agency Teamwork Helps Locate WTC Survivor,

    C. J. Miller, The Journal, January 2002

    ---------------------------------------------------------------------------------

    Residents prescription and other medical needs

    became a serious issue. Stores were closed. Mail delivery

    was suspended. Nonresidents could not enter the area and

    people werent allowed to return if they left.

    Our City Council Representative at the time smug-gled the owner of our area drugstore into the neighbor-

    hood. Tenants volunteered to run the cash register and

    manage the store as he filled residents prescriptions. Some

    of our board members delivered the prescriptions to those

    unable to leave their apartments. It was amazing teamwork

    that allowed him to stay open and we were grateful that there

    was a source for what was life-sustaining medication for

    many people.

    Neighbor to NeighborThe Downtown Solution:

    IPNTAs Guide to Community Healing,

    Independence Plaza North Tenants Association, 2003

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    EXAMPLE 1: ACCESS TO THE FROZENZONE AFTER 9/11

    For security reasons, the streets around the World Trade Center were shut down

    in a pattern that changed repeatedly during the five months following September

    11. The map on page 36, generated by the New York City Office of Emergency

    Management, shows the dates on which sections of the Frozen Zone opened to

    traffic. It does not show when pedestrians, as distinct from vehicles, were

    allowed into closed areas. There was great confusion about this, as individual

    police officers guarding the perimeter of the site were not consistently informed

    of changes in the boundaries or of changes in rules regarding who was or was

    not allowed to cross them. This confusion was particularly harmful to people with

    disabilities, for some of whom communication with police guards was difficult or

    impossible and detouring for blocks around a closed street was unmanageable.

    On the map, the area at the left-hand edge of the site, below Chambers Street,represents Battery Park City, a high-density residential development that was

    home to many people with disabilities in September 2001. The rest of the Frozen

    Zone blocked travel to and from Battery Park City. Residents with disabilities

    faced ongoing disruptions of their lives beyond those experienced by other

    residents.

    A temporary shuttle bus that carried residents through the FrozenZone out to the open streets was not accessible to people with mobil-

    ity impairments.

    Taxis were considered emergency vehicles and allowed in, butAccess-A-Ride vans were not given emergency vehicle clearance

    until several weeks had passed.

    Often, home health aides were not allowed in to care for consumers,and delivery people bringing prescription drugs and medical supplies

    were kept out.

    In the first days after the disaster, residents of the Frozen Zone wereallowed into their apartments for just fifteen minutes, to feed pets and

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    gather clothing, documents, and other essential items. People with

    limited mobility had to turn to CIDNY in order to get permission to

    bring an assistant with them so they could accomplish this task with-

    in the fifteen minutes allotted.

    When bus service was restored in Battery Park City and the areas justoutside the Frozen Zone, many bus stops were blocked by police cars

    and other emergency vehicles. As a result, passengers in wheel-

    chairs needing to use the bus lifts could not do so, because the buses

    stopped too far out in the street.

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    What took the most time was getting Access-A-Ride

    back in operation. First they had to get their computers

    working again. Then the police wanted to have security on

    every vana police officerbut of course they didnt have

    enough police officers at that time. Then there was the issue

    of checkpoints and permits for the vans, and when we got all

    that worked out with the city and the police, the FBI over-

    ruled them and said the Access-A-Ride vans couldnt come

    in.

    Recollection by Susan Scheer, June 24, 2004

    EXAMPLE 2: MENTAL HEALTH NEEDS

    Needs of People who Already Have Mental Illness

    It is important to treat people with mental illness on an ongoing basis, so that they

    have the capacity to function well if a disaster strikes. The passages below high-

    light the importance of having uninterrupted access to prescription medication,

    which requires pharmacies to be open, a mechanism for authorizing prescrip-

    tions, and a source of payment for medication.

    Clinical field experience has shown that disaster sur-

    vivors with mental illness function fairly well following a dis-

    aster, if essential services have not been interrupted. Manydemonstrate an increased ability to handle this stress with-

    out an exacerbation of their mental illness, especially when

    they are able to maintain their medication regimens.

    However, some survivors with mental illness have achieved

    only a tenuous balance before the disaster. The added

    stress of the disaster disrupts this balance; for some, addi-

    tional mental health support services, medications, or hos-

    pitalization may be necessary to regain stability. . .

    Having sufficient financial resources and being able

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    to benefit from a social support network buffer the potential-

    ly devastating effects of a disaster and greatly assist the

    recovery process. An additional resilience factor includes

    the ability to tolerate and cope with disruption and loss. In

    contrast, vulnerability factors include preexisting health or

    emotional problems and additional concurrent stressful life

    events . . . Survivors who have significant concurrent psy-

    chosocial, health, or financial problems are at greater risk for

    depression, anxiety, posttraumatic stress symptoms, or an

    exacerbation of their preexisting condition.

    Training Manual for Mental Health and Human Service Workers in

    Major Disasters,Deborah J. DeWolfe, PhD, MSPH for the Federal

    Emergency Management Agency and the Center for Mental Health

    Services at the Substance Abuse and Mental Health Services

    Administration, 2000

    Needs of People with Disabilities Other Than Mental Illness

    Having to evacuate is unsettling for everyone, but especially unsettling for peo-

    ple with visual, hearing, or cognitive impairments, because they rely on familiar

    sights and routines to orient themselves. Moving from one temporary shelter to

    another seems to raise the stress level of evacuees much more than moving to

    the first shelter.2

    People with disabilities are more likely than others to have to

    leave their first shelter placement because it is not accessible to them. If they

    stay or return to their own homes, they may not be able to arrange for repairs or

    cleanup, due to financial, physical, or mental limitations.

    Some stress is caused by the recovery rather than the event itself, such as the

    frustrations and challenges of dealing with bureaucratic relief agencies or losing

    a job, mirroring that which is experienced by people without disabilities. Peoplewith disabilities, however, often have low incomes, reduced physical stamina,

    and/or mobility impairments that decrease the amount of time and energy that

    they can use in recovery activities.3

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    Needs of People with Newly Acquired Mental Health

    Impairments

    New York City received approximately $125 million over a three-year period for

    crisis counseling and short-term therapy. Within twenty four hours of the World

    Trade Center collapse, DMH [Department of Mental Health] informed the media

    that its mental health counseling and referral information lineLIFENETwas up

    and running in English, Spanish, and Asian languages, announced the public

    relations office of New York Citys DMH. The LIFENET Hot Line received 29,900

    calls in five months.

    4

    Although it played an essential role, the hotline wasprimarily a referral system that could not guarantee the quality or appropriate-

    ness of the care.

    Previous research indicated the vast majority of disaster survivors recover from

    the initial shock and trauma of a disaster usually within weeks or months of the

    event.5

    The citys Department of Health & Mental Hygiene also found that about

    two-thirds of people who developed PTSD symptoms recovered fairly quickly.

    One out of three had persistent PTSD symptoms, especially those who suffered

    another loss or trauma after the World Trade Center disaster, such as losing a job

    or acquiring a disability. Another group developed PTSD symptoms months

    or years after the attack; these people also went through another loss or trauma.

    Project Liberty administrators found that FEMA funding would not help people

    with long-term PTSD and related anxiety and depression, who requiredtraditional mental health care, including therapy, medication, and/or case

    management.6

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    40

    AC is a forty-eight-year-old, African American woman

    who was working on the seventy-eighth floor at One World Trade

    Center on September 11. On that day, she evacuated herself, as

    well as a co-worker who was on fire, out of the building. Since

    that time, AC has suffered from severe posttraumatic stress, com-

    prised of frequent and ongoing flashbacks and nightmares and

    chronic symptoms of depression. Her condition has been exac-

    erbated by financial problems resulting from loss of her employ-

    ment since the World Trade Center attacks.

    Since becoming a consumer at CIDNY, AC has been

    helped with ensuring receipt of much-needed financial assis-

    tance from previously available disaster relief programs and with

    procuring health-care insurance that will meet her ongoing psy-

    chiatric needs. AC also felt safe enough at CIDNY to participate

    in the agencys Project Liberty support group, co-sponsored with

    the Jewish Guild for the Blind. Most recently, AC received help in

    applying for the Red Cross Additional Assistance program.

    On a longer-term basis, CIDNY is working with AC to develop a

    strategy for returning to the world of work.

    CIDNY consumer case file

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    Health professionals flooded Lower Manhattan,

    sometimes to the consternation of those at Ground Zero,

    many of whom told volunteer therapists to go elsewhere . . .

    Mt. Sinai operated a twenty-four-hour hotline for two weeks,

    using eight phone lines to offer telephone counseling to

    community residents too frightened to leave their homes.

    New York Presbyterian Hospital helped a variety of compa-

    nies and organizations to provide onsite group counseling

    and follow-up counseling to their employees . . .

    It became clear that the short-term response was

    inadequate for the longer-term impact on the citys popula-

    tion . . . Project Liberty, the federal and state emergency

    program set up to fund emergency services and counseling

    at workplaces, schools, and homes in the metropolitan

    region, provided $22.7 million, with $14 million reserved for

    use in New York City.

    As late as June 2002, Jack Krauskopf of the USG

    [The 9/11 United Services Group] was concerned that

    although there was a system for crisis counseling and

    short-term mental health assistance, it was not clear if

    there is enough support for the long-term counseling and

    treatment needs that people who have been severely affect-

    ed emotionally have. . . . One major problem was the lack ofan adequate system of public and private insurance to cover

    mental health services, which made any planning for long-

    term psychotherapy virtually meaningless without a huge

    influx of federal and state monies.

    The Frail and the Hardy Seniors of 9/11: The Needs and

    Contributions of Older Americans, interview with Myrna I. Lewis, PhD,of the Mt. Sinai School of Medicine, at Johns Hopkins University,

    Center for Civilian Biodefense Strategies, 2003

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    SECTION 3: LEARNING FROMEXPERIENCESUCCESSFULSTRATEGIES FROM 9/11AND THE 2003 BLACKOUT

    Having a plan that specifically acknowledges the needs of people with disabilities,

    knowing what is needed and how to supply it in the event of disruptions, and prac-

    ticing evacuationthese are a few of the factors that help limit both physical and

    psychological injury during and in the immediate aftermath of a disaster.

    United Cerebral Palsy of NYCs executive and admin-

    istrative offices were at 80 Maiden Lane, only three blocks

    from the World Trade Center site. While all staff were safely

    evacuated following the collapse of both towers, many faced

    long walks home due to the closure of mass transit in

    Manhattan and the lockdown of major bridges and tunnels.

    Hundreds of children and adults with disabilities attend

    UCP/NYC programs citywide. Most have some degree of

    physical impairment, and many use wheelchairs or walkers

    for mobility purposes. Some live in one borough and attend

    a day program in another.

    Manhattan facilities at 23rd Street and Park Avenue

    South faced getting both very young children and adults of

    all ages safely home. Some staff members were able to uti-lize agency vans to drive people home. Other groups of par-

    ticipants, accompanied by staff, headed to buses and sub-

    ways still operating. Private transportation companies,

    which transport many children and adults from their homes

    to programs and back, stayed on the job long past normal

    hours.

    Paula Willingham, supported employment specialist

    with UCP/NYC, contacted families to arrange meeting

    places, then escorted each consumer to that meeting place

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    via public transportation. In Brooklyn, staff members stayed

    overnight with two Manhattan women who attend day pro-

    grams in Brooklyn. They were able to arrange accommoda-

    tions, fill medical prescriptions, and obtain changes of cloth-

    ing for the women as they made them comfortable at nearby

    Belsky House.

    UCP/NYC Family Responds to September 11th Tragedy,

    UCP Image, Fall 2001

    After the 1993 World Trade Center bombing, at the

    suggestion of the local emergency management office, The

    Associated Blind (a local service provider for low- and no-

    vision clients) worked with the New York City Fire

    Department to develop a building evacuation plan and drill

    for their staff, most of whom have limited or no vision. The

    Associated Blind wanted a plan for their staff members cov-

    ering the range of problems that could occur during a disas-

    ter. On September 11th, their efforts paid off. The entire staff

    calmly and safely evacuated their buildings 9th floor, a suc-

    cess they attribute directly to the customized advance plan-

    ning and drills.

    Also on September 11th, a wheelchair user who

    worked on the 68th floor of the World Trade Center was safe-

    ly carried from the building, thanks to a specialized chair

    purchased after the 1993 bombing. A Port Authority of New

    York and New Jersey employee escaped from the 70th floor

    because his prosthetic leg allowed him to keep pace with

    nondisabled workers on the emergency stairsand, he

    says, because of experience gained in the buildings fre-

    quent fire drills since 1993.

    During the attack on the Pentagon, equipment previ-

    ously installed to help employees and visitors with low or no

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    vision to evacuate the facility in the event of an emergency

    made it possible for dozens of sighted individuals to flee the

    smoke-filled corridors as well.

    Emergency Preparedness Initiative Guide on the Special Needsof People with Disabilities, National Organization on Disability, 2002

    Metro New York Developmental Disabilities Services

    Office (DDSO) had to get medications for the relocated indi-

    viduals to them in their temporary quarters. It did not appear

    possible to return to residences, even to pick up medica-

    tions.

    At about 6:00 p.m., Laurie Gamza called Med World, a

    pharmacy in Rockland County that serves these houses.

    Based upon doctors orders on record, Med World filled 2-

    day supplies of medications and delivered them to Metro

    DDSOs Bronx office at about 10:00 p.m. Laurie Gamza andMitch Liner sorted the medications into envelopes according

    to the new residences and the people receiving them, and

    attached Ready-to-Go packets. These Ready-to-Go pack-

    ets listed vital information such as names of correspondents

    and diagnoses for each individual.

    Given the seriousness of their task, Mr. Daniels was

    authorized to use [the State Office of Mental Retardation and

    Developmental Disabilities] Safety and Security vehicle,

    marked Police. Although traffic continued to be very bad,

    the police designation allowed him access to all thorough-

    fares.

    Metro NY DDSO on the Front LinesAssuring the Safety of the

    People We Serve, The Journal, January 2002

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    Of the more than 2,800 people killed in the World

    Trade Center attacks, not one was a person with a develop-

    mental disability, according to a documentary by the

    Institute on Community Integration, called We Watch the City:

    Stories in the Shadow of 9/11. In the film, survivors and wit-

    nesses of the attacks with developmental disabilities share

    their stories of the attack on the World Trade Center.

    Training conducted for people with developmental

    disabilities before the disaster, not for escaping but for being

    able to work, paid off on September 11. In addition, a track-ing system established in preparation for Y2K made it possi-

    ble to keep track of people with disabilities in the hours and

    days immediately after the attacks. The database includes

    names, zip codes, and medication information.

    9 /11 Documentary on New Yorkers with Developmental

    Disabilities Premieres in Minnesota, press release from the Universityof Minnesota, November 21, 2002

    The U.S. Transportation Security Administration has

    developed new procedures it says will increase airline secu-

    rity while making travel more appealing to passengers with

    disabilities. The new guidelines were developed by theagency with help from disability groups, and are to be fol-

    lowed by all TSA screeners across the country.

    Sandra Cammaroto, the first manager of the TSA

    Screening of Persons with Disabilities Program, explained:

    Screeners will talk to blind passengers, help them to empty

    their pockets of metal, and make sure they gather their

    belongings at the end of the X-ray machine. Screeners will

    no longer remove harnesses from service animals and guide

    dogs, but will inspect them by hand. Passengers using

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    wheelchairs who cant walk through the metal detectors will

    be offered a private area where a screener can search them

    by hand.

    New Security Measures for Airline Passengers with Disabilities,Dave Reynolds, Inclusion Daily Express, May 28, 2003

    After the 2003 East Coast blackout, New York City

    senior center staff:

    Went to apartments to retrieve medication for those seniorswho were stranded at the centers

    Traveled by foot and on bike to bring water and food to frailand isolated clients

    Checked up on senior center members, many of whom werescared and confused.

    Emergency Preparedness for Agencies Serving Older People:Lessons from September 11, 2001, and Other Recent Emergency

    Situations, Igal Jellinek, Council of Senior Centers & Services of New

    York City, before the City Council Aging Committee,

    September 18, 2003

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    SECTION 4: LEARNING FROMEXPERIENCELESSONSTHAT SHOULD HAVEBEEN LEARNED BEFORESEPTEMBER 11

    It is essential for mainstream emergency planning and response agencies to

    educate themselves about disability issues, so that past failures to learn the

    same lessons are not perpetually repeated. In this section, an examination of the

    literature that was available before September 11, 2001, regarding disasters and

    people with disabilities is presented. Following the description of each incident

    before 9/11, there is an example of incidents following the World Trade Center

    attack that could have been prevented if the preceding lesson had been learned.

    ---------------------------------------------------------------------------------

    During Hurricane Floyd, the Northridge earthquake, and after the 1993 World

    Trade Center attack, people who were elderly or had severe health conditions or

    disabilities were left stranded, sent to shelters that couldnt accommodate their

    needs, or lost access to their aides and medicationscreating massive prob-

    lems for rescue/relief workers, not to mention for the people who were stranded.

    *

    New York City, 9/11/2001, people who were elderly, with severe health conditions

    or disabilities, were left stranded, sent to shelters that could not accommodate

    them, or lost access to their aides and medicationscreating massive problems

    for rescue/relief workers, not to mention for the people who were stranded.

    ---------------------------------------------------------------------------------

    In addition, during the Nebraska tornado in the 1970s, people who were deaf orhearing impaired had no access to emergency information or relief and emer-

    gency services. During the 1995 earthquake in Japan, many people with

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    mobility and hearing impairments were trapped in their homes, could not hear

    rescuers voices, and found it impossible to evacuate.

    *

    New York City, 9/11/2001, people who were deaf or hearing impaired had no

    access to emergency information or relief and emergency services. Many,

    including those who were mobility or hearing impaired, were trapped in their

    homes, could not hear rescuers voices, and found it impossible to evacuate.

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    EXAMPLE 1: LEAVE NO ONE BEHIND

    Along with its torrential rains, Hurricane Floydthe

    monstrous hurricane that churned up the U.S. East Coast

    last fallbrought a mass of public health problems to North

    Carolina . . .

    People with health conditions or disabilities were left

    stranded in flooded homes, creating a massive burden on

    rescue workers who were already faced with a huge task . . .

    People with health conditions were brought to shel-

    ters that could not accommodate their needs . . . To prevent

    a repeat of the problem, a special task force has been formed

    to coordinate how to evacuate and shelter people with spe-

    cial needs during the next flood or hurricane, Baluss said.

    Health Experts Evaluate the Medical Side Effects of Hurricane

    Floyd, May 24, 2000, Stephanie Kriner, of DisasterRelief.org

    One Year Later, in New York City

    A Red Cross employee on an outreach team found residents with

    disabilities who were overlooked in the evacuation of their apartment buildings:

    Buller remembered one resident who had schizophrenia and had been

    alone since the attacks. We also discovered a blind resident still stuck in his

    apartment, and two others who had multiple sclerosis.

    One of the MS patients was paralyzed and had been alone since

    September 11, Buller continued. She told me shed heard both planes explode,

    but then the power and phones went out, so she couldnt watch television or con-

    tact friends. She was stuck in the dark for two days, not knowing if we had gone

    to war. She had not bathed during that time because her home-care aide was

    unable to get in, and she could not get to the bathroom on her own.

    Immediate Outreach, interview with Dr. Kelly Buller, Red Cross

    Coordinator of Disaster Volunteers, by Christina Ward, DisasterRelief.org,

    October 3, 2001

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    * A man with a hearing impairment was denied shelter

    because personnel could not understand sign language.

    * Persons with cerebral palsy were not served because shel-

    ter volunteers thought they were on drugs or alcohol.

    * A quadriplegic man could not take a shower for a week

    because the shelter was not equipped with an accessible

    stall.

    * A wheelchair user was forced to leave a fifth-floor apart-

    ment because of damage to the elevator. FEMA turned her

    down for emergency housing because the building had

    been judged safe.

    * Disabled people were turned away from shelters and told

    to go to hospitals by staff members who assumed that they

    were sick or injured.

    Disaster! Douglas Lathrop

    Mainstreammagazine, November 1994

    Seven Years After These Discoveries, in New York City

    Mary is the deaf wife of a firefighter. Prior to 9/11, he

    was stationed at the firehouse closest to the WTC. When the

    towers were attacked, the military took over the frequency that

    provides closed-captioning. She was therefore unable to com-

    municate with the outside world for over thrity-six hours, could not

    find out what was happening on the news without closed-

    captioning, and had no idea about her husbands whereabouts or

    condition until he miraculously returned home thirty-eight hours

    later.

    CIDNY consumer case file

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    EXAMPLE 3: EMERGENCY INFORMATIONMUST BE ACCESSIBLE

    On August 13, 2001, the Commission released a Public Notice reminding the

    public and video programming distributors of the distributors obligation to pro-

    vide emergency information in a format accessible to people with hearing dis-

    abilities. At that time, the Commission noted that it had received a number of

    complaints from residents of California, Colorado, Florida, Indiana, Louisiana,

    Maryland, Michigan, Minnesota, Missouri, New York, North Carolina, Ohio,

    Oklahoma, and Texas asserting that video programming distributors had failedto make local emergency information accessible to viewers with hearing disabil-

    ities.

    Definitions:

    These rules apply to: video programming distributors,including broadcasters, cable operators, and satellite televi-

    sion services.

    Emergency information is defined as that which helps to pro-tect life, health, safety or property, and can include . . . spe-

    cific details about the geographic areas affected, evacuation

    orders, detailed descriptions of areas to be evacuated, spe-

    cific evacuation routes, approved shelters or ways to take

    shelter in ones home, instructions on how to secure personal

    property, road closures, and how to obtain relief assistance.

    Reminder to Video Programming Distributors of Obligation to

    Make Emergency Information Accessible to Persons with Hearing or

    Vision Disabilities, FCC memorandum DA 02-1852,

    released July 31, 2002

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    One Month Later, in New York City

    Not only did people who are deaf not understand

    what was happening at the time, but they also missed out on

    the twenty-four-hour television news broadcast, which did

    not include real-time captioning. Most cable news channels

    scrolled headlines along the bottom, but that scroll was not

    directly tied to what they were discussing onscreen. No

    emergency phone numbers included TTY or TDD lines.

    U.S. Disability Community Struggles in Aftermath of Attacks,

    Nicole Bondi, iCan News Service, September 18, 2001

    CIDNYs telephone number was not publicized for at

    least two days after the attack. When it was finally broad-

    cast, it appeared only in the footer, the printed crawl going

    across the bottom of the television screen. I do not

    recall hearing any reporters or city officials announce

    CIDNYs number or any other resource for people with dis-

    abilities affected by the disaster.

    The CIDNY number was the only one they put out,

    and we were just not staffed for that response . . . People

    [staff] were really burned out after a month.

    Recollection of Susan Scheer, June 24, 2004

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    EXAMPLE 4: PLAN AHEAD TO SERVEPEOPLE WITH DISABILITIES

    During the 1970s, the Administration on Aging made

    major efforts to prepare the aging network to respond to the

    special needs of older disaster victims. An interagency

    agreement was negotiated between the Administration on

    Aging and the Federal Emergency Management Agency

    (then the Federal Disaster Assistance Administration), which

    dealt with mutual expectations relative to program and fiscalactivity.

    One of the services that must be established quickly

    is called Disaster Advocate and Outreach Services. Over

    the years, this service has been identified as the most criti-

    cal service that can be provided by the aging network for

    older disaster victims. Disaster advocates are persons who

    volunteer or are employed to work on a one-to-one basis

    with older persons once a Disaster Application Center (DAC)

    is established or even prior to that time.

    During the response to the Omaha, Nebraska, torna-

    do of 1975, older persons crowded into disaster centers

    along with the general population. It was discovered that

    older persons were exiting the center without understandingwhat had just happened to them. They were simply con-

    fused. One of the major factors was hearing loss, which

    makes it extremely difficult to hear certain tones. When a

    great deal of background noise is present, as in a disaster

    center, it becomes almost impossible for a person with that

    kind of difficulty to understand what is being said. If the

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    EXAMPLE 5: THE BEST PREVENTION OFHUMAN TRAGEDY IS INTEGRATION INTO

    THE COMMUNITY

    On January 17, 1995, a severe earthquake rocked

    most of the western section of Japans main island of

    Honshu . . .The Great Kobe Earthquake . . . caused over 8,500

    deaths and many casualties, and at least 450,000 houses

    were destroyed or damaged . . . Everyone had to evacuate to

    emergency places such as schools, community centers,churches, etc. Over 70,000 citizens lived in temporary shel-

    ters for several months.

    Persons with orthopedic disabilities were unable to

    evacuate from their living quarters to designated evacuation

    sites due to the lack of accessibility. Inside their apartments,

    the refrigerators, tables, chest of drawers, and beds were

    rearranged; dishes and glass were all over the floor. Of

    course, wheelchair users were immobilized. Citizens with

    visual disabilities were unable to identify the exit to evacuate

    due to the displacement of furniture. Persons with hearing

    impairments trapped in their homes could not hear the res-

    cuers voices. Persons living in high-rise apartments espe-

    cially found it almost impossible to evacuate by themselvessince there was no electricity either.

    The majority of citizens with disabilities had to move

    from one evacuation site to another.

    One year after the earthquake, Kobe City conducted

    research on all of Kobes residents. The result shows that

    5.2% of the citizens were isolated from the communityin

    other words, had no friends in the community. However,

    14.7% of persons with physical and/or mental challenges

    were totally isolated. This clearly shows that when a natural

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    disaster occurs, persons with disabilities might not be iden-

    tified by community persons to facilitate a rescue.

    Therefore, the best prevention of human tragedy is integra-

    tion into the community and neighborhood network.

    [Emphasis added by CIDNY]

    The research also shows that 22% of persons with

    physical disabilities and 15% of the mentally challenged per-

    sons lost their jobs after the earthquake. Again, the govern-

    ment continues to focus on medical and housing needs, and

    transportation for victims with the least effort put on creat-

    ing an awareness of people with disabilities.

    The 1995 Kobe Earthquake, Professor Akiie Ninomiya, Japan, in

    Disability International, spring 1997

    Six Years Later, in New York City

    During the day of September 11, news broadcasters

    used crawls across the bottom of the television screen to give

    written information to the public. These blocked the only way

    [closed-captioning] that deaf people could get information from

    television. There was uninterrupted coverage of the event for

    days afterward, during which authorities repeated the same infor-

    mation and instructions to the general public over and over. Yet

    there were no specific instructions and information regarding

    people with disabilities, such as a central number they could call

    for assistance. There was no discussion of which facilities were

    accessible for people using wheelchairs, or how to get immediate

    replacement of essential medications and equipment.CIDNY staff notes

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    The majority of older people lived alone or with an

    older spouse, [and a] significant number of these, especial-

    ly the emotionally and the mentally frail, remained hidden

    behind the doors of their apartments and houses. They were

    located only after relief workers and volunteers began going

    door to door checking on every resident . . . There was some

    initial work done, but solidly going through these buildings

    didnt really take place until the beginning of the second

    week . . .

    A number of older persons were found in deteriorat-

    ed conditions with dwindling food, water, medical supplies.

    Some required immediate medical care, emergency medical

    care. The Visiting Nurse Service reported incidents of heart

    attacks and strokes that appeared to be directly related to

    9/11 . . .

    The Frail and the Hardy Seniors of 9/11: The Needs andContributions of Older Americans, interview with Myrna I. Lewis, PhD,

    of the Mt. Sinai School of Medicine, at Johns Hopkins University,

    Center for Civilian Biodefense Strategies, 2003

    For our providers who had to find shelter for their

    clients, each one said that they needed to have a list of shel-

    ters available in an emergency, but that no such list existed.

    Many of our members told us they were never told of any

    emergency shelters during the tragedy of 9/11 and its after-

    math.

    Lessons Learned from Our Citys Aging Services Providers from

    the Tragedy of September 11, 2001, statement by Igal Jellinek, exec-

    utive director, Council of Senior Centers & Services of New York City,before the U.S. Senates Special Committee on Aging,

    Febru